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Wednesday, July 24, 2013

"Be Strong" - Mynra Malveaux is fighting back and sharing her story about ALS disease in order to help and inspire others...

(Suzanne Malveaux is the co-anchor of CNN's international news program "Around The World" and the daughter of Myrna Malveaux)

(CNN) -- With the tap of a toe or the blink of an eye, those
with ALS are redefining what it means to be alive.

I have to admit it took some time to come up with that line
and believe it -- to have that kind of positive outlook on this nasty deadly
disease and the future.

Just a year and a half ago, my mother, Myrna Malveaux, 69,
was healthy. Our family's matriarch, she was the one who was the life of the
party, the trusted confidante but town crier of all family secrets, the glue
that held my father, me, and my three siblings together.

When I was told she had ALS I honestly didn't know what it
was. But then my sister described it to me over the phone and I had to pull
over the car. It's a fatal, fast-moving neuromuscular disease that would
paralyze my mother limb by limb. First robbing her of her ability to swallow,
then speak, move and breathe.

When that reality set in, I spent many nights in my home,
crying on the floor. What enabled me to get up was that my mother accepted her
fate with a strength and grace I'd never seen before. In anyone.

When she began choking on her food, losing her ability to
swallow, she got a feeding tube.

When she lost her ability to walk, she got a motorized
wheelchair.

When she could no longer speak, she picked up a word board
and started spelling out her conversations, still telling my father what to do.

And finally when she lost her ability to breathe, she got a
tracheotomy and ventilator to stay alive.

Which is why the notion of what it means to be alive, for
me, has completely changed.

I've met people like former NFL New Orleans Saints player
Steve Gleason, who now, at age 36, with ALS, is completely paralyzed. He uses
eye-tracking technology to open doors, send e-mails, and tweet by blinking his
eyes.

I've also met Augie Nieto, the founder of Life Fitness gym
equipment. The 53-year-old Californian is running a corporation, communicating
and raising millions of dollars for ALS research, by tapping with his toes.

So you can see where I might get my inspiration in telling
their stories.

Don't get me wrong, I know it's a devastating path to travel.
Someone described it to me as "imagining yourself, sitting in a chair, and
being completely duct-taped head to toe, with only your eyes left open. That's
what it's like to have ALS."

It robs you of your physical abilities but it leaves your
mind and spirit strong.

Being alive looks different. It becomes all about your
emotional connections to those you love.

My mother smiles when she sees her grandchildren, her eyes
light up when you walk in the door, she relaxes when the sun shines on her
face. These days our family is just about hanging out.

Very little is known about how people get ALS. In 90% of
cases it just happens out of the blue. It's considered a rare disease, in part,
because patients don't live long enough to be counted. Right now there is no
cure.

I hope by sharing my own experience, as well as that of
others, we can learn more together.